MG

Unique patient-led study into life with myasthenia gravis published in Neurology and Therapy

eCMSadmin — Thu, 18 Nov 2021 09:00:00 +0000

Unique patient-led study into life with myasthenia gravis published in Neurology and Therapy

Kenza Seddik, Patient Value Neurology & Europe/International Solutions

eCMSadmin Thu 18/11/2021 - 10:00

Myasthenia gravis (MG) is a chronic neuromuscular condition, with an annual incidence of 8 – 10 cases for every 1 million, which can occur at any age and in any race. , As a rare, yet severe disease, working directly with the patient community to better understand their lived experience is so important, to help us identify unmet needs and any gaps in access to care.

Recently, a patient-led and co-authored study into the real-life experience of MG was published in Neurology and Therapy, bringing to life the true impact of the disease on patients’ everyday lives. Contributing to this unique analysis has been insightful in so many ways, and collaborating with people living with MG was a valuable opportunity to understand first-hand the challenges they experience.

This collaboration was led by a Patient Council; nine patient advocates across Europe and the United States, all living with MG. Strong partnerships like these between patient advocates and ��ֳ� are one step forward in our mission to support innovation in MG and help facilitate more open dialogue between patients and doctors.

Throughout the writing of this report, five key themes were uncovered that help shine a light on the reality of living with MG and emphasise what it means to live with a disease with such varying, fluctuating symptoms, that are not widely understood. We learned from patients the difficulty of adapting their everyday life to manage their symptoms, the challenges of communicating their experience to their physicians, and the emotional toll this takes.

You can read the full patient-led report in Neurology and Therapy and find out more about these key themes here.

We’re proud that this analysis can sit alongside the growing body of valuable literature in this space. Through listening to patients and learning from their insights, we hope to elevate the patient voice, gain a deeper understanding of their experience, and ultimately work together to fulfil unmet needs.

The development of ‘The Lived Experience of Myasthenia Gravis: A Patient-led Analysis’ manuscript was led by two patient advocates in MG: Nancy Law from Colorado, USA and Kelly Davio from London, UK. The study has been published posthumously following Nancy’s death in September 2021 and her invaluable contribution to this paper and leadership of the MG patient advocacy community is hugely appreciated by all involved.

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Neurology & Therapy MG

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��ֳ� at AAN 2021: A patient-led analysis on the experience of living with MG

eCMSadmin — Mon, 19 Apr 2021 09:00:00 +0000

��ֳ� at AAN 2021: A patient-led analysis on the experience of living with MG

Kenza Seddik, Rare Disease Patient Experience Lead

eCMSadmin Mon 19/04/2021 - 11:00

At ��ֳ� we put patients at the heart of everything we do. In order to improve outcomes for patients, we need a deep understanding of their current experience of living with their condition, especially in rare diseases such as MG. In collaboration with my colleague Veronica Porkess, I am thrilled that we have been able to collaborate with patients to present a detailed patient-led analysis of the lived experience of MG as a poster at this year’s American Academy of Neurology (AAN) annual meeting.

The journey began 2 years ago, when we started to collect insights about the lived experience with MG, including hearing patients’ stories directly from them. We soon realised that the published literature did not fully reflect the day-to-day reality of living with MG.

In order to better understand the lived experience we partnered with an international patient council comprised of nine local/national patient advocates in seven countries throughout Europe and the U.S. These experts identified the most relevant of the 114 insights previously gathered from multiple sources, with each council member representing the experiences of fellow patients in their country. Finally, we worked with two members of the patient council, Nancy Law (of the Myasthenia Gravis Foundation of America) and Kelly Davio, to consolidate the feedback and develop this patient-led analysis into a publication.

This process reflects ��ֳ�’s vision of being “Inspired by patients, driven by science”, as well as our determination to raise the voices of patients with rare diseases.

We hope this analysis provides pivotal insights into the reality of living with MG and that this will support healthcare professionals to improve understanding and management of this rare and often debilitating neuromuscular disease.

The focus on patient perspectives at AAN will continue during a ��ֳ�-sponsored virtual symposium “Journey to the Cause”. In this session James F. Howard, Jr., of the University of North Carolina at Chapel Hill and Saiju Jacob, from the University Hospitals Birmingham, UK will trace the clinical features of rare autoimmune neuromuscular diseases, including MG, back to their origins in the immune system, and one of the abstract authors, Nancy Law, will share her first-hand experience of living with the disease. The symposium will be hosted virtually on Tuesday, April 20 at 9:00-10:00 a.m. EST.

With over 20 years of heritage in the research and development of drugs in neurological disorders, we are bringing the same committed approach to our work in rare disease. Our goal is to meet the needs of those often left silent, unrecognized, or misunderstood by their rare condition. Understanding firsthand the experience of living with a severe neurological disease, such as MG, is core to our commitment in developing and delivering solutions to help shape individualized treatment and care for patients.

Thank you to all members of the patient council who contributed to the analysis, our patient authors (Kelly Davio and Nancy Law), as well as Melissa Blunck (��ֳ� Pharma) and Dawn Lobban (Envision Pharma Group) whose tireless efforts made this possible.

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AAN 2021 Myasthenia Gravis MG American Academy of Neurology AANEM

Comment:

Posted by Rachael Conway, 26 April 2021

Brilliant Kenza - you are a constant inspiration and source of energy in keeping us focused on identifying and meeting the unmet needs of individual patients :-)

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Our commitment to innovative technology in Rare Disease

eCMSadmin — Mon, 23 Nov 2020 17:00:00 +0000

Our commitment to innovative technology in Rare Disease

Chris Clark, Patient Value Neurology & Europe/International Solutions

eCMSadmin Mon 23/11/2020 - 18:00

At ��ֳ�, we believe in the power of partnerships and using data and technology with purpose to solve some of the most complex challenges in healthcare. To that end, we are excited to collaborate with doc.ai, a leading artificial intelligence (AI) platform that specializes in the capture of real-world data. The goal of this collaboration is to increase our understanding of the nuances and complexities of myasthenia gravis (MG) so that we can ultimately develop better treatments for patients.

Together, doc.ai and ��ֳ� will launch an at-home digital health trial app designed to detect facial muscle changes and vocal muscle weakness in people with MG and build an AI model that can predict symptom patterns and flares. Participants will document their symptoms through a daily survey as well as audio and video recordings twice a week and track other health information, such as exercise and diet, to provide an accurate picture of their health. Ultimately, this AI technology may help people with MG track their disease progression and make informed decisions on when to push themselves and when to rest.

MG is a rare, autoimmune, neuromuscular condition where the body’s immune system mistakenly targets the connection between the nerves and the muscles. The most common symptoms of MG are muscle weakness and fatigue; however, symptoms can vary greatly, which can cause profound unpredictability. The lack of understanding surrounding the triggers for intermittent worsening of symptoms can significantly affect the disease experience. Improving understanding about the day-to-day experience of living with MG is urgently needed. Only then can we fully appreciate the impact of uncontrolled MG on patients and accelerate better outcomes.

��ֳ�’s research collaboration with doc.ai is the first of its kind. By leveraging the power of doc.ai’s cutting-edge technology in combination with our expertise in neurology and rare disease, we hope to optimize care for people with MG.

The digital health trial for MG is now open and is enrolling up to 100 participants through 2021. Visit doc.ai/mgresearch for more information.

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doc.ai MG AI

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Our focus on Myasthenia Gravis at AANEM 2020

eCMSadmin — Wed, 07 Oct 2020 17:00:00 +0000

Our focus on Myasthenia Gravis at AANEM 2020

Ahmad Alrawi, Neurology Patient Value Unit

eCMSadmin Wed 07/10/2020 - 19:00

As we convene this year’s annual meeting of the American Association of Neuromuscular & Electrodiagnostic Medicine (AANEM), it’s important to acknowledge how different this year’s event is – and to embrace the chance for us to connect digitally.

Although, this year, we might not be sharing the same physical space, we are no less committed to using this week to learn and collaborate with our peers to improve patient care. Throughout the meeting, ��ֳ� will be joining in conversations to advance support and care for those who live with rare conditions like generalized Myasthenia Gravis (gMG). We are harnessing this opportunity to share research, insights and perspectives that we hope could improve the lives of people living with rare neuromuscular conditions.

We are proud to be sharing for the first time our “gMG Never Rests,” campaign at AANEM, an initiative which acknowledges the unique, unpredictable challenges patients with gMG can experience. The campaign is designed to help improve recognition of and communication about the burden of gMG and to better equip neurologists in addressing and responding to patient needs. In an AANEM Industry Forum, on Friday, October 9 from 9:15-10:15am CDT, we will be hosting MG experts and a patient with first hand lived MG experiences to discuss how the community can work together to better predict the unpredictable in gMG.

At ��ֳ�, we know that many patients with uncontrolled gMG live each day with a sense of instability as they cope with unpredictable, debilitating symptoms and worries about the risk of serious events related to their condition. Given the wide range of and fluctuating nature of gMG symptoms, it can be difficult for physicians to understand when a condition is under control. We hope “gMG Never Rests” will help patients feel supported and understood while navigating their own experiences.

Also at AANEM, ��ֳ� will be presenting an abstract titled “Treatment and Burden of MG: A Retrospective Study of a US Insurance Claims Database.” This study assessed the treatment patterns and burden of disease among patients with gMG. Despite current treatment options, the burden of disease remains high, which demonstrates a need for additional therapeutic options. The analysis will be presented on Saturday, October 10 at 3:15–3:45pm CDT.

AANEM offers a great moment for scientific exchange of the latest clinical and scientific developments in neuromuscular and electrodiagnostic medicine, and ��ֳ� is excited to be a part of advancing the treatment of neuromuscular conditions like gMG. Throughout the meeting we will be showcasing all of our activities via a virtual booth experience. Registered delegates can visit the booth to learn more about how ��ֳ� is building something bold for people living with Rare Diseases!

To everyone participating in the meeting we look forward to connecting with you over the coming days!

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AANEM Rare Diseases Mysathenia Gravis MG

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Going Virtual – Supporting the MG Community Online

eCMSadmin — Mon, 25 May 2020 00:00:00 +0000

Going Virtual – Supporting the MG Community Online

Tyler Story, Patient Value Neurology & Europe/International Solutions - Medical Affairs

eCMSadmin Mon 25/05/2020 - 02:00

The COVID-19 pandemic is impacting all of us in different ways, and we have been adjusting to a new normal over recent weeks and months. It is more important than ever for organizations to reach communities where they are. The unique challenges we are facing have led to new and alternative ways to reach and support patient populations, as more people turn to online and social communities to stay connected.

We know immunocompromised individuals, like those living with myasthenia gravis (MG), an autoimmune, neuromuscular disease, are seeking information on how COVID-19 could impact their lives and treatment plans. ��ֳ� is participating in ongoing conversations with patient advocacy groups and physicians about what resources are most helpful for people living with MG and their caregivers.

We are also following the lead of organizations like the Myasthenia Gravis Foundation of America (MGFA), who are quickly adapting their events from in-person to virtual settings. This flexibility allows patients, caregivers and their healthcare providers (HCPs) to continue learning and sharing – while maintaining a healthy distance from each other.

Recently, ��ֳ� participated in the MGFA national conference, which was held in an online setting this year. The event featured a virtual exhibit hall and web-based education sessions related to clinical trials, treatments, awareness and tips for people living with MG.

��ֳ� involvement included participation in the following events:

A panel discussion on how clinical trials work and considerations for people with MG who may be interested in participating in a trial.
A presentation around elevating voices of people with MG for advocacy, disease awareness and scientific advancement, which highlighted the many ways patients can do this. These included providing input on clinical trial design and endpoints, participating in trials and participating in patient ambassador programs like ��ֳ�’s MG Leadership Program to share their experiences.
A medical booth as part of the virtual exhibit hall to provide HCPs and patients with information on clinical trials and the opportunity to participate in MycarinGstudy, a Phase 3 study in adults with generalized MG.

We were grateful for the opportunity to virtually connect with the global MG community to elevate patient voices in a safe environment. We will continue to take our cues from global MG community experts during this time, and we look forward to further collaborating on initiatives and resources that can provide true value to the patient communities we serve.

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Myasthenia Gravis ��ֳ� Myasthenia Gravis Foundation of America MGFA 2020 MG

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Driven by Patient Value, Not Numbers

eCMSadmin — Tue, 25 Feb 2020 00:00:00 +0000

Driven by Patient Value, Not Numbers

Chris Clark, Patient Value Neurology & Europe/International Solutions

eCMSadmin Tue 25/02/2020 - 01:00

At ��ֳ�, we believe the greatest needs can’t always be measured in numbers. We don’t see patient population sizes, we see people in need. Whether a severe disease impacts many people or a few, our goal is to help provide what patients value so they can achieve their best, whatever that means for them. This ethos is ever present around Rare Disease Day – this year on the rarest day, Leap Day 2020 – as we join the rare disease community to raise awareness and support for people living with rare diseases.

Through decades of serving the neurology and immunology communities, ��ֳ� has improved lives with the development of targeted medicines that make an impact and support programs for the communities we serve. As a continuation of this heritage, we are looking to support underserved patient populations living with rare neurological and immunological diseases where current treatment options offer little hope. This includes patients with rare immunoglobulin G (IgG) autoantibody-mediated autoimmune diseases – such as myasthenia gravis (MG), immune thrombocytopenia (ITP) and chronic inflammatory demyelinating polyneuropathy (CIDP) – who may experience symptoms that can be unpredictable, life-limiting and even life-threatening.

MG, for example, is a chronic neuromuscular condition where the body’s immune system mistakenly targets the connection between the nerves and the muscles, leading to muscle weakness and fatigue. We’ve been particularly motivated by the MG community and have learned about the extent to which MG symptoms can affect patients physically, socially and emotionally. One MG patient described her experience as lonely and isolating – not being able to breathe or speak well enough to talk to a loved one on the phone, or see well enough to read.

��ֳ� is focused on finding ways to improve the experience and quality of life for people suffering from these IgG-mediated diseases. We are continuing to use patient insights to inform our scientific advances and to build solutions that will deliver value so people living with these debilitating diseases can live their fullest lives.

This Rare Disease Day, ��ֳ� employees around the world are rallying together to participate in global and regional advocacy and policy events. We’re taking the time to listen and learn from patients, advocacy groups and the community – an area we’re committed to not just on this awareness day, but all year long. When we take time to truly listen, understand and partner with people living with rare diseases, we can help provide value that makes lives better beyond just treatment.

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Rare Disease Day 2020 MG ITP CIDP

Comment:

Posted by Ulrika, 29 February 2020

Thank you! Amazing company! You already have my email address. Thank you Wim!

Comment:

Posted by Charles E. Kimple, 2 March 2020

Thank you for your advocacy and information. I have had CIDP for the past 7 years and have received IVIG every 6 weeks. I have a concern that
the disease is progressing into something different. I will be going. To Cleveland Clinic tomorrow for second opinion with a Neuromuscular
Neurologist.

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MG

Unique patient-led study into life with myasthenia gravis published in Neurology and Therapy

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��ֳ� at AAN 2021: A patient-led analysis on the experience of living with MG

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Our commitment to innovative technology in Rare Disease

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Our focus on Myasthenia Gravis at AANEM 2020

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Going Virtual – Supporting the MG Community Online

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Driven by Patient Value, Not Numbers

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MG

Unique patient-led study into life with myasthenia gravis published in Neurology and Therapy

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������ֳ� at AAN 2021: A patient-led analysis on the experience of living with MG

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Our commitment to innovative technology in Rare Disease

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Our focus on Myasthenia Gravis at AANEM 2020

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Going Virtual – Supporting the MG Community Online

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Driven by Patient Value, Not Numbers

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��ֳ� at AAN 2021: A patient-led analysis on the experience of living with MG